July 2016

07/29/2016

"Dear Elias," Olive writes in her Sibling Camp notebook, part of Adam's Camp Alaska, a therapeutic adventure camp for families with a child on the autism spectrum, "I wish you would get off your ipad and play with me."

She signs the letter: "Love Olive".

Meanwhile Nick and I sat around a campfire, with other parents of children on the spectrum, sharing details of our lives only possible to air with others who walk amidst the absurdities of autism. We tromped through the woods together, discussing our darkest days, when we let ourselves imagine a different life without IEPs and therapy and medication and tantrums that rise from the smallest shift, an earthquake from a rose petal falling to the floor.

I wish you would play with me.

The siblings of children with special needs carry their own blank books, empty pages instead of photographs of two similar faces building blocks together, pushing each other on swings, running hand in hand through a field of flowers. There is a longing they will always live with that is hard to put into words without seeming ungrateful for the sibling that is theirs. And in Olive's case, hers alone, with no other sibling to share the experience of Elias as a brother.

On another page in her notebook, Olive answered the question: What is your favorite thing to do with your sibling? I was told she struggled to answer this. She finally settled on a picture of them playing in the sprinkler, something they haven't done together this summer, so she dug into her memory bank to a previous year, to a time she remembers laughing with her big brother.

I want this to be an easy question for my daughter, but I'm learning this is her story too and she harbors her own sadness and a not so hidden desire for a different brother.

"What was your favorite thing about camp?" I asked Olive as we drove home from Girdwood, the small ski town 45 minutes south of Anchorage.

"Playing with Hailey and Joseph." Two of the siblings in her program, age 11 and 9, who she followed around like a bumble bee to flowers. Not rafting or dog sledding or ice cream or yoga or the sleepover on Tuesday night. Just playing with typical kids who understand what its like to have other people stare at your family when you walk into a public space, kids who don't ask her, "Whats wrong with your brother?"

Just kids, playing.

There is so much I love about Adams Camp Alaska. The team model of multiple therapists from different disciplines working with a small group of five children as they participate in outdoor adventures, the time away from my kids to rest, to run, to hang out with parents who get it, but I think what makes the experience so meaningful to me, to my family, is the sibling component. The time and attention given to the forgotten ones, the children whose lives are altered by the needs of their brother or sister and yet rarely get a chance to express it.

And even if they didn't spend the week talking about their special needs sibling and how he or she makes them feel, and maybe even because they didn't have to, that they just enjoyed the variety of activities and time together, that is important enough for me to want to do Adams Camp again next year. Even though Elias ages out of the Trailblazer program, I want the experience to continue for our family.

"But I can still go..." Olive said, when she heard me saying Elias will be 13 next year and technically too old for the program-- though they have already made an exception for another older camper, so we hope to continue, as long as we can afford it, and the camp can receive the funds to keep expanding.

For I hope to sit around that fire again, with both familiar and new parents, laughing about these abnormal lives we lead, releasing years of pent up emotions with the embers, with the crackle of wry humor acquired only by traveling so far between milestones, when the world of parenthood looks nothing like the vision we painted prior to conception, but we walk on anyways, because, honestly, what else would we do.

And I want to give Olive that gift of time to play with other kids, who understand what its like to long for your sibling to just play with you.

07/25/2016

Its that time of year in Alaska, when the darkest it gets is dusk, and we all cram in camping trips and fishing adventures and summer camps, so it seems like we are only home to unpack and pack again.

I am in Girdwood now, at Adam’s Camp, a much needed program for children on the autism spectrum and their families. Before this, the North Shore of the Kenai River for dipnetting with friends and family, my parents here from Cape Cod to help on the beach, as Nick and I stood in the water with our giant nets, where we caught 55 sockeye salmon over four days. And before camping on the beach with our fishing tribe, we spent a week in Seward where Olive attended a Bluegrass camp and the rest of us explored our soon-to-be new home. Olive now wants her very own fiddle and can say that she’s been in a band that played on the street for ice-cream money, singing “All Fly Away” with a troupe of six-year-olds as she strummed on a borrowed guitar.

And in between our outings, our comings and goings, Nick and I flounder amidst all the decisions that arise with a move. Do we rent or sell our house? Do we rent a storage space or buy or make our own? What kind of house do we want to build? How long can we survive in a trailer before something gives? Space, creativity, solitude. Our sanity may go first.

So I’m here now, in the parking lot of Alyeska, alone, listening to the rain on the trailer roof, my feet up and computer on my lap, soaking in some much needed respite before the frenetic packing and moving and adapting begins again.

This morning, I dropped Olive off at her sibling program with plans to swim at the Alyeska resort, her rock-climbing cancelled due to the much-needed rain. Its wildfire season in Alaska, with one burning close to Anchorage, so we all exhaled when the sky shifted from days of seventy-degree sunshine to fat drops falling on our heads. Phew, we need this, as much as an outdoor exploration camp would be more fun in the sun, I’ll take rain.

Elias smiled big when he learned rock-climbing was cancelled, as he didn't like the sound of the bell at the top of the wall, nor the feeling of being off the ground. He’s a cautious kid, my Elias, and fearless, all in one. A constant contradiction, charming and infuriating, weak and strong, determined and helpless, loving and cruel, dark and light, like all of us, limitless in our possibilities, never staying still long enough to describe in accurate detail. More grey than black or white.

I wish everyone saw and accepted and celebrated the ambiguity that lies within each and every soul, not red or blue, north or south, but shifting like the weather, always unpredictable, where the only constant is change.

And perhaps the only thing we know for sure, is the sun will again, it may take months, like it does in winter in Barrow, but rise, rise it will.

07/08/2016

"Mommy did you know people with my color skin use to be mean to people with darker colored skin, like Zion's."

"Tell me more, Olive."

"Well, like they use to order them around and tell them they couldn't do stuff, but thats just not fair."

"You're right Babe, its not fair at all."

"I mean Zion's the same as me. And Aleisha. And Fatu. And Eva and Elaine. And Isaacc, I mean his skin's really dark, even darker than Zion's."

"And he's a cool kid who wants to play, just like you."

"Yeah! Its not fair."

This conversation happened over a month ago and I didn't say, "Olive it still happens today." We talked about people working to change society, to make it more fair for everyone, including her friends with dark skin.

I didn't tell her racism is still alive and well today--I didn't have that conversation with my daughter.

Its part of the privilege I wear, with my mostly white skin, not needing to prepare my children, as young as six, to encounter racism daily, from individuals and institutions, in all their interactions with the world.

Letting my daughter think racism is part of our history, something to be studied in school, the week of Martin Luther King day perhaps, and not a current reality that we benefit from in all aspects of life.

This is my privilege too.

The way I can drive over the speed limit, knowing if the police pull me over the worst that will happen is I'll owe the court some money; and its just as likely I can smile pretty and be off with a warning.

The way I don't have to speak for being "white". The way "white" is not used to describe me when I move somewhere new.

"You know Christy, she's that short white girl."

The way I am trusted when I walk into a store not to shoplift. The way people smile at me when we pass on the sidewalk instead of crossing the street.

This is the bare bones beginning, a mere whisp of what it means to be white in the United States, today.

The world is wide open open to people who look like me, and yet so many of us white folks claim this as reality for everyone, not seeing the way doors open with ease for our ivory skin, trying to explain to people of color that they just got it wrong, if only they tried harder, if only they didn't take it all so personally, if only they didn't make it about race, if only they talked differently, if they only they dressed differently, if only they were more white like me.

I'd like to go back to that conversation with Olive and not just talk about all the kids she loves who were "once" considered second class citizens, but let her know that the world today is still unfair.

I need to tell Olive that its not a "use to", that in 2016, many people with skin the color of ours still believe they are inherently better than men and women with darker skin-- that an old tape still plays in the back of my mind, one I need to rewind, rewrite, erase, that says my white face is somehow purer than mahogany or ebony, redwood or sapphire.

Nothing will change without the unpacking of biases, absorbed, like breath, through my fair-skinned pores, stored in the closets of my back brain.

Racism is my problem.

Racism is a white person's problem.

I owe it to my daughter to have this conversation, to help her understand the privilege she wears, so she can unpack it, and work towards dismantling the powers that be, as she becomes an even better ally for her friends with skin a darker hue than ours.

07/06/2016

After racing up and down 3,022 feet, with 300 other women, on the 4th of July, before 1,000's of cheering fans, my children still expect me to be at their beck and call. Thank god for Nick who keeps saying, "Just let your Mom rest. She just ran up a mountain."

The women's race didn't begin until 2:30 p.m., which made a long day of waiting, wondering what I was getting myself into by committing to this crazy event, a mountain race without an official trail, with cliffs and scree and snow, competitors kicking rocks loose, well-documented injuries, even a death, a history of grit and lore, the second oldest footrace in the United States, that legend says began with a bar bet, one drunk friend boasting to another: 'I bet I can run up and down that thar mountain in under an hour."

Even before the official race began, over a hundred years ago, Sewardites ran up Mt Marathon to scout for incoming ships, racing each other down to be the first to bring the news to town. A ship is coming, a ship is coming...

Nowadays, we run the mountain for fun, or so I had to remind myself, partway up the 34 degree slope, on a humid day, stuck in a line of women, all sweating and breathing hard, hands on our knees, heads bowed. I chose to do this, I repeated, as I started to think: What the fuck am I doing to myself, I'll never do this stupid race again.

Self-torture on a mountain side.

Thank god for the spectators with water bottles who camped along the so-called-trail. I can't tell you what any of them looked like, but I graciously accepted their offerings, barely getting the magic words out as I trudged onwards, ever up.

When we broke tree-line, and the halfway mark, and I could feel a breeze coming off the bay, and my legs stopped screaming at me, I finally really did start having fun, finding off-paths to pass, a few women at a time, catching up to the first wave that started five-minuted before us, muscle memory putting one foot in front of another, years of hockey and soccer preparing me to push beyond comfort, to dig into my reserve energy, to leave nothing on the field of scree and stones.

"What's your name?" a woman in front of me asked.

"Christy."

When I passed her a few minutes later, she said to my back, "You go Christy, go get em."

Before I reached Race Point, the peak of our climb, I heard the wave of cheers from almost 3,000 feet below, tens of thousands strong, for the front runners who had already scaled up and down Mt. Marathon and were running the half mile-through town to the finish line on 4th Avenue.

Holy shit, they're already done, I thought as I gave everything I had to the mountainside, climbing hands and feet towards the peak, 3,022 feet from the street, to the rock I would run around before turning to run back down.

The descent begins with a long snow field, which I fell into and slid on my ass, slowing myself with my right heel so I didn't hit the woman in front of me who rode with more apprehension than me, thanks to my friend Mary Beth, a seventeen-time finisher, who showed me how to ride the snow and gave me tips on different routes, teaching me about a diagonal crack along the cliffs at the base of the mountain, that I selected as my way up, reaching the base within the top ten of my second wave, after sprinting the half-mile up the street so I didn't have to wait in a line of women to ascend, already tired and winded, wondering how the hell I was going to climb a mountain after running that hard on the road--but I did, and now I was on my way down, off the crunchy snowfield and onto the scree, broken up and soft from the men racing before us, ski-running, side to side down the steep slope, going as fast as I felt safe to travel on my 43-year-old knees; when a few 20-somethings from my wave passed me easily I wondered for a moment if I could go any faster down the slope to the cheering crowd below, and decided just as quickly: No.

My family's down there, I repeated, I want to reach them in one piece. My family's down there, waiting for me...

After the scree comes the stream bed, the most technical part of the descent, with small waterfalls to jump or in my case slide down, wet rocks and mud, all at a steep pitch, that leads back to the cliffs, where with tired legs I again traversed the crack, hoping the rock holds as I made my way down to the claps of the safety crew waiting at the bottom.

"Thanks for clapping," I managed to say after I made it down the hardest part.

"Thanks for racing," one of them said.

"Its my first time."

"Well enjoy, you're almost there, watch your step down the last bit of rocks and then you're on the street."

And I turned the corner to see hundreds of folks at the base of the mountain, with thousands more waiting along Jefferson and 4th Ave, and my old sprinter legs kicked in and I'm racing down the road, smiling, even high-fiving kids with arms reached out. I lost steam halfway there, as I did on the uphill, 400 meters my race back in the day, not the 800 as I struggled through now, after a mountain climb, but the cheers of the crowd kept me going, and when I was close enough to the finish line and could see the clock, I pushed with all I had, totally missing the smiling faces of my family and friends who cheered my name, but crossing that coveted line in one hour, fourteen minutes and 58 seconds.

I finished 84th out of the 282 women that actually finished the race, 16th in my age group, and if you ask me if I'll race Mt. Marathon again next year my answer is: "Hell, yeah!"

Its just good you didn't ask during the first half of the climb, when I questioned my sanity for imposing such a physically grueling task on myself, I mean, isn't my life hard enough without racing up a mountain on top of it all?

Oh, but how much harder it would be without mountains to climb, without opportunities to beat up this body of mine, to feel both weak and strong in the same hour, to sweat and bleed, strain to breathe, and come through it all, a little more alive than yesterday.

07/03/2016

After months of relative calm, the volcano has returned, flaring up in our boy, never quite sure when he'll explode, tears of rage over a Dot to Dot book with pages torn out--I want Olive to put them back in now--Elias swatting his Dad just for walking past, grabbing his sister's arm, hitting his Mom.

Last night after a baked ham dinner at David's table, Olive feeling grown and helpful, cleared the dishes with me, and made the mistake of reaching for her brother's plate. Elias squeezed her small hand in his toned one, now thicker and stronger than mine. When David and I both mentioned that his behavior could cost him dessert, he stood up and clomped to the freezer, grabbed the tubs of vanilla and chocolate chip and thumped them on the counter. I picked them up before he could, holding them up high, and he came at me, all hot lava and ash, until Nick picked up our twelve-year-old son and carried him to the porch, forcing him out as Elias tried to hold onto the sliding glass door.

It sprinkled on us, light raindrops, like tears, as Nick and I blocked our boy from bringing his fire back to David's house. Nick eventually carried him sideways to the trailer, where he cried and threw his bag of clothes to the floor, before forcing his way out and making it back to the porch, where I attempted to hug-hold-restrain my boy, saying softly: "I love you, Elias, you're safe."

"Let me go! Mom, let me go!"

"What do you want to do?"

"I want to hit you!" His voice a rumble from the deep.

"You want to hurt your own Mom?" I ask, hoping he'll say no.

"Yes!"

Just an hour earlier, Elias picked a Lilly from our neighbor's cabin, with prompting from their gentleman friend, and handed it to me with the words: "I love you Mom."

"You don't really want to hurt me, Elias." And I know this to be true, even when he wants to, even when he reaches for my face, hands aflame.

"Yes I do!!"

Nick stands above us with a jug of water, hopeful a technique that worked for me last week might work again. Elias had charged after his sister, over what, I can't remember, and when I stood between my children he hit me hard in the chest. As my own fire welled up, I made an impulsive decision to dump the cup of water I planned to drink on my son's head.

Better than hitting him back, I suppose.

Elias's aggressive flow down the mountain stopped, as he stared down at his wet fleece, stumped. Olive and I walked towards the shed, her eyes wide, a hint of glee overtaking the fear from a moment ago. When Elias ran after us calling my name--Mom, Mom, Mom- I turned, forced light into my voice, and said, "Well, that was just ridiculous. What was I thinking dumping water on your head?"

"I don't know?!" Elias said in a voice between laughter and tears. Olive smiled at her strange Mom and brother and the situation shifted, just like that, as our smoke dissipated into the clear air.

Back on the porch, after the explosion over lost ice-cream, with Elias writhing around on the splintered wood, as I attempted to contain him with my arms and legs, Nick held the jug of water over Elias's head and dumped again, only this time my boy's eruptions grew deeper and more dangerous.

Nick heaved Elias up, his sweatshirt half over his head--Dad No! Dad stop!-- and threw him in the back of our car. Elias opened the door and tried to jump out but Nick forced him back inside, hopped in the driver's seat and started the Honda Element. Out of habit, Elias put on his seatbelt, forcefully and without grace, and Nick drove away, around the corner and up to our clearing, where my husband jumped out of the car and locked our son inside. It took Elias a bit of time amidst his rage to realize he could unlock the doors from the inside, and when he emerged he was no calmer, all spit and fire, so Nick left him there, amidst the Alders and Spruce, and drove the few hundred yards back to David's place.

As I stood on the porch to meet the car, I saw Elias far behind, at the bottom of the driveway, walking without shoes, without canes, over gravel and stones, dirt and sticks, fully on his own.